Why a Diagnosis Is (and Isn’t) Important When a Child Has Learning Challenges

I work with many young children whose families are in the early stages of monitoring their developmental and behavioral concerns in order to determine if an evaluation and diagnosis are needed. Most parents are aware that they will need a diagnosis for insurance purposes, or for their child to receive intervention services at school. But what if you’re paying privately for services, or what if your child goes to private school? Is it really necessary?

The short answer is “Yes.” However, the diagnosis isn’t actually the most important part. What is absolutely necessary is a comprehensive evaluation. The reason is this: An evaluation is the beginning of your journey in learning how to connect with and support your child, and how to help others do the same. It tells us where to go next, and without it, we run the risk of our children being misunderstood.

The questions I always ask parents include: Are your concerns impairing your child’s development and/or functioning? Are these lagging skills or behaviors getting in the way of your child getting to school in the morning, connecting with others in play, or developing new skills? If yes, then it is time to investigate. What are the lagging skills? What are the strengths? What are the triggers? Answering these questions leads us to planning for the best school fit, the best support at home and the best targeted interventions. This path leads to your child being understood.

Clinical Diagnoses Versus an Educational Classification 

So, what is the difference between clinical and educational? Psychiatrists, psychologists, and other therapists are going to use the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) to classify a diagnosis, which is needed for insurance purposes. According to the DSM-5, there are three types of ADHD, one autism spectrum disorder with varying levels of severity, multiple types of learning disabilities, and different types of anxiety and depressive disorders. On the other hand, there are only 13 educational classifications under the Individuals with Disabilities Education Act (IDEA). Therefore, a child’s educational classification is not as specific as their clinical diagnosis. This is just fine as long as everyone working with your child has access to comprehensive evaluation reports and fully understands your child’s needs and strengths.

Evolution of Special Education in the United States 

In my generation of parents, who attended elementary school in the 1970s and 1980s, our memory of special education services often varies from the services our children receive today. We recall separate rooms and smaller buses, when today our children are to be educated in the least restrictive environment with their same-age peers to the maximum extent possible. Do separate classrooms and specialized transportation still exist for some? Yes. But they are implemented when justified to ensure the safety and appropriate education of children both academically and socially.

Children with an Individualized Education Plan (IEP) under IDEA may receive extra time on a test alongside their peers, small group academic instruction, or a self-contained classroom of students with similar needs and a teacher specifically trained to support those needs. It is very important to understand that each state, county and school vary on how these services are implemented. Parents may feel that one school is very supportive of their child’s needs, while they feel another school in the same district is doing the bare minimum. This is why advocating for your child’s school support is so important.

Facing Our Fear of the Label 

Sometimes, parents are so fearful of having their child labeled that they unintentionally put off much-needed services. Others will begin therapies that match their child’s symptoms, but the question of what is globally explaining their child’s developmental needs is looming. The evaluation process can be a very emotional one for parents. However, most parents I work with are so thankful for the detailed evaluation report that recommends what to do next.

Remember: No two people are the same. No two children are the same. And certainly no two children with the same clinical diagnosis or educational classification are the same. A comprehensive evaluation will outline these individual differences, but a diagnosis will not. We must all understand that the diagnosis is never the finish line. It is not where we stop asking questions because we think we understand the child based on one word or phrase. The diagnosis and evaluation report are the starting line, where we begin to understand and ask more questions about how to support, teach, and connect with a child.

While a diagnosis does not change a child, it should change everyone’s perspective who is working with the child. If a child was considered “difficult” or “noncompliant” before the diagnosis, now they are seen as “having difficulty” due to a learning or social weakness, or “task-avoidant” due to anxiety or sensory sensitivities. A teacher may have misunderstood a sensory meltdown for “acting-out” behavior, but after the diagnosis we have more data to determine what triggered the behavior. A child who was described as “aloof” or “self-directed” now has a roadmap for parents and teachers to increase regulation, attention and social engagement. The evaluation report and diagnosis lead to a shift in expectations and a plan of individualized support.

Lowering the Bar for Success 

Parents will say, “I don’t want him labeled because I don’t want his teacher to expect less of him.” However, the truth is that many problematic behaviors are a child’s response to teachers and parents expecting too much at this developmental level or with this particular skill. A quality evaluation report will outline the individual strengths and weaknesses of your child so we can lower the bar on weaker skills for now, while continuing to encourage and develop strengths.

An example of “lowering the bar for success” is the child who is very intelligent, but who cannot emotionally self-regulate in order to learn in a classroom. No one can learn without first being regulated and attentive, without which we cannot connect with or trust those who are teaching us. Think about how you feel when you are really stressed; not much thinking and learning can happen until you feel calm again, right? Or, how you would feel sitting in a classroom where the instructor is only speaking a language unknown to you. You’d be pretty disengaged, right? We wouldn’t expect much from you until you could understand what is being asked of you. If we expected you to participate, you would likely feel anxious, avoid engaging, or quit altogether. Sometimes lower expectations are what a child needs to feel successful, and then we raise the bar as skills develop.

It’s Better Over Here 

After the evaluation and diagnosis, you can enter into a realm where the behavior no longer feels like the child’s “choice.” Prior to a diagnosis, there is often much confusion about what a child can do versus what they are choosing to do. After the diagnosis, you can walk through a figurative door to the other side of more understanding and acceptance of your child’s strengths and what your child needs to thrive. It’s better over here.